RSV Bronchiolitis

Just before Luca’s birthday, Max’s breathing started being a less efficient, especially at night and eventually we had to put him back on oxygen but just at night. Jemma and I kept a careful eye on him, but as the week progressed he got worse. On the Wednesday his community nurse came to see him and took a specimen of his trachy secretions for testing. On Thursday Max needed oxygen during the day too, and that was very difficult as he doesn’t keep his thermovent on if he doesn’t want to, let alone an oxygen mask! On Friday morning, Max’s community nurse came to see him again, and although his breathing seemed better, and he didn’t really need the oxygen on much, she listened to his chest and felt that it would be wise to have him reviewed in A&E. We traipsed in in the early afternoon, dreading what it would bring. We met a really lovely registrar who spent a while getting herself familiar with Max’s file before she came to meet him. She was lovely to him and he responded well to her, showing her all his signs and smiling his incredible smile. In the meantime the results of Max’s trachy secretions came back showing that he had RSV Bronchiolitis. The registrar listened to his chest and had an x-ray taken to ensure that there was nothing else that we should be concerned about. When that came back clear we discussed how we were going to manage him, especially as there were no beds at all in St George’s. We said that we were more than happy to take him home and manage him there, she was more than happy for us to do that, so by 6 pm we were home and getting ready to go out for dinner. Max seemed to improve from Saturday, needing only occasional oxygen during the day on Saturday, very little oxygen during the day on Sunday and only oxygen at night by Monday. On Tuesday night he was off his oxygen altogether. A one week turn-around! During this time Luca definitely also had a cough and a cold but he just needed a little extra sleep and increased milk to get over his.

The following week was taken up with getting Christmas sorted, including buying and decorating the Christmas tree and wrapping gifts. On the Thursday, Teresa, Jemma’s mum, came up to visit for the day. Having spent a few hours at the Brush and Bisque-it and made a series of mugs, tiles and other assorted china (most destined to be Christmas gifts!) we all spent time together playing at home and Max and Luca got to open their Christmas presents from Teresa. They got some lovely outfits, most of them I’m sure you will spot in the various pictures.

On Monday 12th December we had an appointment with Peppy Brock, Max’s oncologist. She was, again, very impressed by his progress especially his walking which she described as rather military in manner! She decided that maybe it was time to stop his toremifene, which we started back in February 2004 (the oral drug which is normally used with prostate cancer and breast cancer and which is an oestrogen blocker). This we did with immediate effect. This means that Max is now only on one regular drug and that is his glycopyralate, which is a drug which dries out his secretions. This is a huge difference from when he came home from the neonatal unit, let alone when he came home back in March 2004! Also it has now been over four months since the last bronchoscopy and MRI scan and we thought it best to start the process of organising the next one to happen in the next couple of months. I have since emailed Mr Daya and Dr Brock will be writing to him too.

On Friday 16th December we had an appointment with Dr Marion McGowan, Max’s paediatric consulant, however for some reason we saw her registrar, who was lovely and seemed very on the ball with Max’s history. She too was impressed by the huge changes since we last saw Dr McGowan back in April 2005 and the changes were significant. First and foremost Max was only just sitting up in April, and still pitching backwards at regular intervals for no apparent reason! Now not only is he bum-shuffling at a speed of knots, he is also learning to walk. He happily lies on his stomach, something he was always loathe to do, he is communicating through sign language which is growing steadily and he clearly understands and responds more and more to everything we say.

In the run up to Christmas we have been extremely busy, with Granny, GranBri and (Greataunt) Sandra coming for “Christmas” dinner on 13th, Justin’s office coming for mulled wine and mince pies on 15th, with the last guest leaving at around midnight! On Sunday 18th we were down at Grandpa and Granny Mal’s for a large family gathering “Christmas” lunch, on Monday was the Lockwood Press Christmas party to which I was also kindly invited which was lunch in Paris (including the Eurostar journey there and back). On the 20th, instead of packing we delivered Christmas presents and then Moira and Sarah came over to visit and we ended up doing some early Christmas present opening and drinking a couple of glasses of wine.

Our Christmas holidays were starting on 21st December and we had done no packing whatsoever, but luckily the shuttle was booked for 10 pm and we spent the day packing and getting ready. We left promptly at 7.00 pm, dropping Jemma off at Clapham Junction on the way. Considering the large number of gifts and stuff we were taking, the car didn’t actually look that full – I guess that is what driving a van is all about! Merry Christmas and a Happy New Year to you all.